I have been lurking here for a few weeks, just trying to absorb as much info as I can.
A little background, I am 35 and was recently diagnosed with ESRF. My creatinine is holding steady at 6.4,my neph calculates that I have lost a little over 90% of my kidney function. I just had my fistula surgery last week. Luckily I have not required any dialysis yet and am still working full time, thought it is not easy sometimes.
Everything seems to be happening so fast and I have questions from time to time, so please bear with me if I ask some noobie questions.
Hi Rich, and welcome to Home Dialysis Central–we’re glad you found us.
This is a scary time, to be sure, but you’re doing exactly the right thing by seeking information. Knowledge is power.
Right now, with so much to learn, you might benefit from one of our other sites: Kidney School at http://www.kidneyschool.org. It’s a free, interactive kidney learning center in 16 modules that each take about 30 minutes to go through “live” or you can download them as pdfs and read them.
You’re not alone–feel free to ask questions.
Welcome to Home Dialysis Central. We’re happy you found our message boards. If you haven’t visited the rest of Home Dialysis Central, you might want to check it out. You can read about home dialysis treatments – all 5 of them, Medicare FAQs, find one or more clinics near you that offer home dialysis, read patient stories, and more. Don’t be afraid to read what we’ve written for professionals too.
Howdy Rich, glad you finally posted and I hope you’ll find the information from us patients useful. If you can’t find the answer just go ahead and post and we’ll do our best to try to guide and help you.
I assume you will be trained for home dialysis right away? Or will you dialyze in-center?
Thanks for the replies…
Beth and Dori, I have done a lot of reading at both homedialysis.org and kidneyschool.org. Both sites are very informative, thanks.
Gus, I’m not really sure about the training, I have only seen my neph 3 times. The way he is talking he doesnt think I require dialysis just yet, but he is retiring this month and perhaps the new neph will think differently. I would like to stay away from the in-center if I can, I think it would be very difficult to dialyze in-center and continue to work full time…
In the U.S., people are considered by Medicare to have kidney failure if their creatinine is 6 (if diabetic) or 8 (if not diabetic) or if their creatinine clearance is 15 (diabetic) or 10 (not diabetic). I don’t know if your doctor has done a creatinine clearance or calculated your glomerular filtration rate (GFR) using your most recent labs, but this might be a question to ask. GFR (and creatinine clearance) give you a number that is an approximation of your remaining kidney function. This may be how the doctor said that you have about 10% kidney function left. Most people start dialysis when their kidney function is about 10%.
I’d advise you to talk with your doctor about the type of dialysis that you’d like to do and, if that type is hemodialysis, you should get a dialysis access soon to allow it to mature. You may also want to consider a kidney transplant. If you have a relative or someone you know who is willing to donate a kidney to you, you may be able to avoid dialysis or to get a transplant sooner than if you have to wait for a deceased donor’s kidney. People can be evaluated for transplant before they have kidney failure.
Beth, here is what I know. I had a routine blood test done by my family doctor for two reasons A.) I had been feeling very tired and B.) My uric acid level is sky high and has been for at least 15 years and I wanted to check that out.
My DR. called me at work and said he was very concerned about my results and wanted me to see a neph asap. Previous to this I hadn’t had any blood work done in about 6 years.(i know, stupid)
I go to the neph, he says based on the blood work from my family DR my kidney failure was between stage 4 and 5. He ordered another set of labs along with a 24hr urine, kidney ultrasound and an upper extremity vein mapping.
I go to the neph the second time and now, according to the test results, my kidney failure is at stage five and he calculated from my weight, age and the results of the tests he had done that I had lost “a little more than 90% of my kidney function”.He also said my kidneys had “lost about half their mass” or shrunk… He doubled my allopurinol (uric acid med’s) and put me on a host of other drugs, phosphate binder, lasik etc…
He told me that he would prefer that I have a transplant, but there was something going on with my liver that would preclude me from that option, but that I would be a good candidate for home dialysis, especially since my wife is a nurse, should my condition worsen.
He had me see a vascular surgeon to schedule my fistula surgery, which I had done June 13th and have been squeezing a stress ball to help it mature ever since.
The last time I saw him I had more lab work done two days before my appt. and this time my numbers have remained steady and what ever was going on with the liver had cleared up. He was again talking transplant and about me going to The Ohio State University to be evaluated.
I have a half brother who wants to give me a kidney, but I cant accept it. I could never live with myself if something happened to him due to me taking one of his kidneys…
Sorry so long and detailed, I just didnt want you to think I was making anything up…
Rich, you already have a fistula and your kidney function is quite bad…in the best of my knowledge it may be worthwhile to find out which clinic in your area offers home training, you may want to be prepared on knowing who can train you for home dialysis. Once your all set and dialyzing at home you then can put thought about accepting a kidney from a relative or family. On the other hand, a cadaveric kidney takes sometime. In the best interest get trained immediately and go home directly without needing to go in-center…
Just my 2 cents…
Thank’s Gus, that is sound advice and I will do exactly that…
BTW… just so no one thinks I may be a troll, I registered here about 4 day’s ago, but I am still waiting for an admin to activate my account. Thats why I continue to post as a guest…
All new member requests come to me to validate, and I didn’t see that one, so you may want to try again. Or, if you included a commercial website, I deleted it (we don’t allow websites unless they are related in some way to kidney disease).
I do check the Boards even on weekends (as you can see)–and get less email then, so go for it.
Just being devil’s advocate a little, but I don’t think it’s a catastrophe to have to start dialysis in-centre if things work out that way. When you first start, and usually continuing for a couple of years at least, you still have a pretty good level of residual kidney function left (usually about 10%). So, between the dialysis and your own function, you may get good enough dialysis 3 times per week. It depends on the individual, but I don’t think there’s any harm in going in-centre for a while. It might even be less stressful. In the long term though, there are definitely many advantages to doing your hemodialysis daily. Good luck. I hope you don’t have to start any dialysis for a long time to come.
I just re-registered using my Yahoo e-mail account. I previously registered under my hotmail account. I tried using my hotmail account again, but now it says there is already a member using that e-mail???
Well, you never know with Hotmail. 8) But I validated your new one.
I saw this and I’m wondering, must your doctor or center tell what your GFR/creatinine levels are? You get your blood checked every month and they go over the #'s but my doctor and center have never told me what my GFR/creatinine levels are, and I have head that some people may get kidney function back.
Guest, you may need to ask if your doctors are not volunteering the information, but it is absolutely your right to know. We recommend in the lab test module of Kidney School (http://www.kidneyschool.org) that folks keep a notebook of their blood test values and track them over time themselves.
Typically the dietitian reviews lab test results with patients. If the “report card” doesn’t report your creatinine ask for a copy of your labs. Some patients track their own labs over time on paper or using computer programs like Excel.
Organizations like the National Kidney Foundation and others are pushing labs to report estimated GFRs too, but I’m not sure if your clinic’s lab does this so you may not see a GFR level for a while. However, if you have your lab results, including creatinine, BUN (sometimes called serum urea nitrogen), and albumin, you can use one of the online GFR calculators to calculate your own GFR.
Recovery of kidney function when someone has “chronic” kidney disease is rare. It sometimes occurs when the patient had an acute event that led to kidney failure (a trauma to the kidney such as can occur in an accident, surgery, etc.). It almost never occurs when someone has kidney damage caused by a chronic illness like high blood pressure, diabetes, auto-immune diseases, or recurrent kidney infections.